Posted by: Andrew | January 17, 2013

Could be worse

I sit in the waiting area of the hospital, waiting for the drugs that might pick me up from this latest MS relapse. People walk, shuffle or buzz past under battery power. I try to take my mind off it – I don’t want to follow this train of thought.

I return to my book but it is a struggle. I put it down and turn instead to the display case on my right containing a scale model of the hospital precincts. I try to distract myself searching for the building I am sitting in, but I quickly notice something is awry.


Fences have been ripped out of their settings, roofs stripped from buildings. Cars crash into uprooted trees and dead bodies lie in the surrounding streets. It seems the hospital authorities are offering us a glance into what our surroundings might look like in the wake of a major nuclear incident.


Take your medicine, the tiny dead people say, it could all be a lot worse. It is one way of offering us solace I suppose. But my apocalyptic reverie is broken when the  buzzer the pharmacist gave me goes off. I go to collect the pills and walk out the hospital. Still walking. Grateful for that and other small mercies.

Posted by: Andrew | January 13, 2013

Small world

The rhetoric around our shrinking world can be breathless. Burgeoning travel brings the world to our cities and streets, technology brings distant people into our houses, while social media enable relationships with people you may never actually meet. It is seen as a good thing. Typically a young thing. A shrinking world full of possibilites.

And I suppose it is exciting – to make a snap decision, book online, then hop on a plane* and be in Slovenia in two hours. To shuffle forward with your fellow passengers on arrival, reach the open door and see mountains in the distance, feel the noticeably colder air hit the back of your throat. To breathe it again, just to check, and realise how far from Walthamstow you have actually come.

Setting off down the aeroplane steps, gingerly, good hand gripping the rail, the realities of another shrinking world reassert themselves. A world of fading physical capacities and limited action. One in which you past the once beloved bicycle gathering dust in the hall, you calculate whether you will walk to the tube station today or if you ought to wait for a bus. Will you have the energy for class tonight? Is it sensible to return to swimming this weekend? Do I want to walk across the heath this weekend or is it better to stay in the Southampton Arms and read?

Are these limitations temporary or are they the boundaries of my life now?

It is risky to travel abroad feeling like this. The fears and doubts kept me awake the night before I was due to go. An awareness that I would be travelling abroad alone – without the safety nets of work contacts or friends to visit. Something I used to do before diagnosis. I used to do it. I stopped.

I don’t want to be ill abroad, not on my own, but really must I stop? The realisation is that I have become complicit in the shrinking of my own world. If I am still able I have a responsibility to do better. And this particular day I was able to walk out of the house, as far as the bus stop and then let trains take me onto the plane, into the taxi the other side, through unfamiliar suburbs and into the elegant old heart of a new city. One of the lucky ones.

Moving slowly under the weight of my shoulder bag and the protests of my weakening left side, I made my way across the glistening cobbles, passing under the christmas lights forming shooting stars across the river. Fine rain drifted down as my breath billowed up in the cold air. My eyes lifted to my new, expansive surroundings. For a while at least, the walls had stopped closing in.

*at least ‘hop on’ after a bus-tube-train journey and couple of tedious hours in the airport.

Posted by: Andrew | November 11, 2012

The Magic Mountain

It is understandable not to want to take responsibility sometimes. When you are struggling to manage an illness that is not of your making there is no blame here, nothing to atone for. The problem is that the consequences of illness take no heed of this – decisions need to be made about the here and now. Decisions and expectations around the future demand to be re-appraised. It is understandable to want to hand those decisions over to others. To be taken into care, as J and I would say in despondent times. To retreat from responsibility for a while.

To retreat to the mountains ideally, where idea and the aesthetic of the alpine sanatorium have long held my imagination.  Total abandonment to a slower, more contemplative pace of life.  Prescribed routines removing any need for decision-making. A willing surrender, despite the gentle badinage of protest when the nursing staff arrive on the sun terrace to take you off to your next treatment.  Knowing looks and half-smiles exchanged with the other residents. The occasional visit from ‘down below’: encouraging words, a building of strength, but a sense you should stay longer. Another summer perhaps.

At what point does the Magic Mountain lose its hold, though? For Thomas Mann’s residents it was war breaking out down below that jolted them from their dreaminess. For me it was the jolt of a broken routine – a break from the consoling patterns and fatigues of work, alongside a break from the numbing comfort of anti-depressants. I thought I had wanted time to think. I was probably right to want that, though I didn’t expect the results to be so difficult.

Thoughts came about the future, about the past. About the passage of time. Seven years of residence on this Magic Mountain of illness, a dreamy stasis in which the world down below moved on, leaving me behind and making it ever harder to return. But down below is where life is being lived, as the stories from my visitors made ever more plain.

Mountains have their uses and I can forgive myself I think for retreating up here for a while. The trick is not to neglect the vantage point it gives you though – the opportunity to look down at the world and consider how you might need to live differently in future. Truer to other needs, perhaps.

But I stayed too long. I need to return down below, however conscious I am that it has become an uphill struggle to get there.

Posted by: Andrew | October 13, 2012

Coming back to me

The sun shone, almost all the time. Nothing, not even the mess of the tram works and the ugly festival flyposters could shield me from its effect. Edinburgh, my first time back in two years, probably longer.

The sun shone and I found myself opening up. Alone in Edinburgh, alone at the Fringe I opened out and talked to people. In cafes, pubs and venues. I felt at home, I felt ok, open to the ideas in the films, plays and comedy shows I went to see. Open to reading new things. Open to playing with all those ideas in writing. Writing something different again.

Edinburgh is an uplifting place for me, I realise this now. The sun shone and the river coaxed me into running – again the first time in years. It didn’t feel like it mattered that I stopped, started and stuttered as my weakened legs dictated. Need a rest? Nae bother – here’s something for you to look at while you do.

I was lifted and running, moving anyway, in one of the best places in the world to be. Here, the feeling was all that mattered.

I went to Edinburgh to recover from life. In doing so I also recovered these things I used to like, these ways I used to feel, these things that I had somehow carelessly lost touch with. And I include myself in that.

Posted by: Andrew | July 27, 2012


ShiftMS‘s new film, Gallop, premiered at the National Theatre this month. I was lucky enough to be there, to have the chance to respond to the film and to join the filmmakers in conversation. I have since watched the film again and what I said at the premiere, recalled below, to my mind still holds.


It’s quite something to watch a diagnosis scene like that.  It takes me straight back to my own, although when I think about that it is not so much the diagnosis I remember, but the advice I was given afterwards. ‘You’re diagnosis is as mild as they get, Andrew. Do what you can to put it to the back of your mind and get on with life. And steer clear of the MS websites – they’re not for people like you.’

And looking back now I can see he was right.  I know this because obviously I ignored his advice, and in doing so ended up swamped by a wave of information reaching across the full spectrum of MS. A lot of it wasn’t for me. Much of it was frightening and dispiriting.  I turned from these websites and ran.  I ran away in all respects.  And this is why looking back I can also see that my neurologist’s advice was wrong. I think I struggled on my own for far too long.

A couple of years later I found ShiftMS, or rather ShiftMS found me, George having somehow found me on Twitter.  Within a few weeks I was sat in a bar with other young MSers, swapping stories, frustrations and advice. The stuff I was learning felt personalized, tailored. The same ethos which prevails on the ShiftMS website too, with it’s post it note questions and suggestions I have used and contributed to since. It has made me a fan of personalised, rather than broadcast, information.

So I was surprised to learn that ShiftMS was making a film. Films can’t be personalised and tailored – was Shift really going to move into one-size-fits-all information? But having watched the film I’m not sure that’s what it does.

It avoids this fate through setting aside information and taking a more expressive, emotional path. Look again at that diagnosis scene.  Here was the chance for the information money-shot: what MS is, how it might progress, what treatments are available.  But all detail is muffled – instead we are lost in one man’s confusion.  There is no information in there other than what we learn about the messy eating habits of neurologists.  This is not a film about what MS is. It is a film about how it looks and feels.

The visuals of course go beyond realism with the appearances of the magical white horse – a metaphor running throughout Gallop.  And use of mystery and metaphor is how the film avoids becoming a one-size-fits-all exercise.  The beauty of metaphor and emotion generally is how they create the space for you to bring your own experiences to the film in a way that an information broadcast wouldn’t allow. It keeps the film personalized, tailored. It keeps it ShiftMS.

At How the Light Gets In, philosopher Robert Rowland Smith described how metaphors, while containing no knowledge, can nevertheless help you think.  Gallop has this – it has the potential to help people think about MS. And perhaps, I hope, to think differently.

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